I recently had an enlightening conversation with a hospital chaplain following a somewhat disappointing clinic visit with my son’s Liver Transplant multidisciplinary team. I had spoken with this particular chaplain some time previously, months or years I’m not actually sure now, & she had some recall of our situation. As she was fairly far removed from my life she, being similarly of the Christian faith & familiar with complex medical situations by working in the hospital, represented a rather “safe” place to discuss some ongoing baggage that I carry, primarily in relation to my very complex special needs son & caring for his needs.
It’s difficult to encapsulate what exactly the weighty or burdensome points are that continue to overload me. The most recent stressor, & the one that I’m having a hard time “moving on” from relates to a failed special education battle on behalf of my son’s legally entitled rights. There are numerous historical battles &/or traumas that we faced in this domain, encompassing his lifespan, but most particularly from 2001 to 2016. During that time frame I spent significant amounts of time learning to arm myself a la Wrightslaw.com & several Michigan based special education advocacy training, supports, & services to better be able to advocate on my son’s behalf in relation to his special education services & IEP development.
Here is some of what I’ve heard over the course of the years that really instilled in me the perspective that I needed to “perform” at a high level in relation to my son & his needs or overwhelmed or wounded me in general:
- “You understand special education law better than 98% of the parents I’ve worked with and when you are ready I want you to go to Law School so that you can become an attorney” & assist other special needs families–a law school professor who ran a Disability Law Clinic in a local university assisting me with our “case”.
- “Your son is one of the most complicated, if not the most complicated, child I’ve ever had to evaluate–& that’s saying something for I’m only asked to evaluate the complex kids”…& this is just between us, I’m not going to put that in my write up–a psychologist tasked with performing an “independent educational evaluation” to see whether my son was “autistic” vs “cognitively impaired”.
- “Josiah is the most complicated child in my practice”–a Physical Medicine & Rehabilitation Doctor who has an entire practice dedicated to complex special needs kids & their families which provides support & intervention in medical, therapeutic, social work, & educational arenas & also has an autism center.
- “I think you are a delusional parent who refuses to accept that you have a mentally retarded child”–an advocate from Michigan Protection & Advocacy Services (an organization designed to protect fragile children & adults from abuses, which can assist, at no cost, with educational battles, etc.) who was “supporting” us in a Due Process Hearing Request/Settlement process related to my son’s education. She said this when I brought up the more that 40 point difference in IQ’s found between outside testing (borderline normal IQ) & school-based testing.
- “I think it’s unlikely your son is going to go 35 years without another open heart surgery; & next time I’m going to replace his aortic valve.”–my son’s Heart Surgeon in our post-surgical follow-up visit in 2000 when I’d asked if he might not need further interventions until around age 40 when his known congenital heart condition was more likely to require intervention per the Pediatric Cardiologist. The heart surgeon’s nurse “translated” that statement knowing the doctor & my son’s medical status into “he’ll probably need another heart surgery around junior high age.” (he was 4 at that second heart surgery)…he has yet to have a 3rd heart surgery & he is now 22…
- “I can’t handle your neediness so I’m going to pull away.”–a close family member on whom I relied for some emotional & other support.
- “Your child will never walk, nor talk; your child will never read nor write.”–an in-home therapist (PT or OT) or teacher or nurse (can’t remember which one said it just the exact words) who worked with us during the first 2 years of my son’s life via the state & the Early Intervention Program.
- “Your child is already performing above his ability level so we don’t need to provide him with those supports.”–special education personnel during a MET (Multidisciplinary Evaluation Team) Review for an IEP (Individualized Education Plan). They wanted to pull virtually all educational supports since Josiah’s performance already exceeded his (alleged by them) “IQ” level.
- “It is vitally important for your son to be educated alongside typically developing peers.”–the Behavioral Pediatrician who diagnosed my son to be on the Autism Spectrum as PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified, aka “Atypical Autism”). This advice was absolutely ignored, as was the autism spectrum diagnosis, by the special education team, starting in 2001.
- “Why hasn’t your son been here all along.”–principal of an autism school when we visited them before placing my son there for the summer before a trial of kindergarten in a local Christian school (alongside his twin brother).
- “I think the regular education setting is the perfect place for Josiah and he will do well”–a teacher from the autism school after his summer there.
- “Your son’s IQ is so low that we’re having a hard time quantifying it. It is likely that he will require lifelong care.”–Physical Medicine & Rehabilitation Psychologist on Josiah’s first Neuro-Psychological Evaluation as a preschooler…he would later test as having a “borderline low normal” IQ before going into kindergarten…
- “I have no doubt that [our school system] did all the illegal things you claim & if you’d come to me a year ago we could have kicked them in the balls, but now there is nothing you can do for your son…I’d really like to see you become an advocate and help other people’s kids.”–the private sector attorney who was at least willing to consider taking our latest Due Process Hearing Special Education Case. In observing my son during our meeting (he was also a parent of a special needs child) he was flabbergasted that the school made certain claims about him as it was evident that he was high-functioning & clearly on the autism spectrum.
- “We’re sorry, Mrs. Curren, but your son can receive regular education or he can receive adaptive supports, but not both.”–special education director in our local school district, in clear violation of the special ed law. The school system consistently refused to do “functional analysis” nor to write up Josiah’s myriad “functional needs” into his IEP because he was on the “graduation track”.
- “You’re a better advocate than I am.”–a volunteer advocate from the ARC who was assisting us in our first special ed hearing request (this was terrifying to me for I felt very overwhelmed and out of my element in advocating “alone” & with minimal movement on the part of the school system).
- “Your son’s case is too complicated” so we can’t help you–an autism advocacy organization who was considering assisting us in our second due process hearing situation. We’d heard similar things over the years from other advocacy organizations so were discouraged & again without help.
- “High-functioning autistic kids are the ones getting the most short-changed” from the education system–my son’s primary care doctor.
- “The best transition plans are the ones created by the families”–same doc as above.
- “Your son has a brain tumor.”–evaluating Internal Medicine Physician who’d ordered a brain scan to look for possible “encephalapathy” as a potential associated condition to his abnormal liver vascuarization (CAPV–Congenital Absence of the Portal Vein), Thanksgiving week, 2009.
- “Your son’s liver is filled with masses” aka tumors–another phone call a couple days apart from the above message from the above doctor.
- “We’ve biopsied multiple lesions of the liver and all appear to be normal liver tissue; your son is not a candidate for a liver transplant.”–the general physician who’d performed the Liver Biopsy, Christmas Eve 2009.
- “We believe we got the entire tumor” which was an Adenoma–adult neurosurgeon, part of the Pituitary Tumor Clinic, June 2010. An adenoma was atypical for both my son’s age & sex & its presence hadn’t shown up in bloodwork, just the scan.
- “Your son needs a liver transplant.”–Liver Transplant doctor, after the previous “normal liver tissue biopsies” were re-evaluated under new protocols & some of the tissue was found to be “pre-cancerous”, December 2011.
- “The ideal candidate to be your son’s donor would be a 12 year old gunshot victim.”–Liver Transplant Doctor.
- “Your son should be transplanted within the next 3 months”–Liver Transplant Doctor, January 2012. We needed to be “on-call” for any possible available liver, to return any offer calls within an hour & be able to be at the hospital within 5 hours. This level of intensity & this 3 month message continued at 3 month intervals for nearly a year and a half. The last Liver Transplant Clinic visit prior to my son’s Liver Transplant the doctor admitted that they had no idea when he might get a liver and he felt bad saying another 3 months when it had already been more than a year. This waiting scenario had me on pins & needles (& in heavy prayer for the donor & their family as the future death of someone else for my son to receive a whole organ transplant weighed heavy on my heart).
- “Never have I been so happy to be proved so wrong”–director of special education admitting that placing my son on the “graduation track” in high school was the appropriate placement. He had thought Josiah could only get a “certificate of completion” & go on to a supportive setting, like Jo Brighton, following high school graduation.
- Learning the legal special education definition of “Transition” related to preparing the special needs student for further education, employment, & independent living via concrete Legally Mandated steps taken along the way. Virtually all transition related activities were denied &/or unaddressed by our local school district; I thought they would kick in following Josiah’s Liver Transplant adjustment in his Junior Year of High School, & this lack of transition was a key component of why we once again pursued a Due Process Hearing…
Well, that’s a flavor of some of what was/is weighing on me that lead me to speak with the hospital chaplain recently (sorry it’s not in chronological but rather stream of consciousness order). Fortunately she was familiar with very complicated medical scenarios & has worked closely with pediatric patients & families including into the patient’s adult years. She brought up the concept of “Trauma Informed Therapy” in agreeing that our family, myself & my special needs son in particular, had suffered some form of PTSD, (which has also been mentioned by Josiah’s doctor & concurred by his case manager/supports coordinator from community mental health).
Anyway, sometime after this conversation with the chaplain I ran across a short video online that discussed the concept of “Complex PTSD” as being different from PTSD itself & that CPTSD got me looking online for further info. That lead me to the article that inspired this post, found here:
Understanding Complex Trauma, Complex Reactions, and Treatment Approaches, by
Christine A. Courtois, PhD
I’m going to pull a number of snippets from her article that seem relevant to our situation to some degree & perhaps add some comments:
“To summarize: complex traumatic events and experiences can be defined as stressors that are:
(1) repetitive, prolonged, or cumulative (2 ) most often interpersonal, involving direct harm, exploitation, and maltreatment including neglect/abandonment/antipathy by primary caregivers or other ostensibly responsible adults, and (3) often occur at developmentally vulnerable times in the victim’s life, especially in early childhood or adolescence, but can also occur later in life and in conditions of vulnerability associated with disability/ disempowerment/dependency/age /infirmity, and so on.”
The author is speaking primarily to providers, so this is not a lay-person’s way of looking at things. I’m not remotely saying that Josiah, myself, or other family members are actually facing CPTSD, I just see certain parallels to what some of us carry…
“… violating and/or exploitation of another person.”
This aspect could describe some of what we faced from special education…
“Rather than creating conditions of protection and security within the relationship, abuse by primary attachment figures instead becomes the cause of great distress and creates conditions of gross insecurity and instability for the child including misgivings about the trustworthiness of others…it often occurs repeatedly and, in many cases, becomes chronic and escalates over time…the victim usually does not have adequate time to regain emotional equilibrium between occurrences and is left with the knowledge that it can happen again at any time. This awareness, in turn, leads to states of ongoing vigilance, anticipation, and anxiety. Rather than having a secure and relatively carefree childhood, abused children are worried and hypervigilant. The psychological energy that would normally go to learning and development instead goes to coping and survival.”
The bolded portions in the above paragraph represent the aspects of that seem to coincide with our special education experience & to a lesser degree the medical uncertainty related to my son’s complex & multifaceted & multi-systems challenges.
“Child abuse, occurring in the context of essential relationships, involves significant betrayal of the responsibilities of those relationships. In addition, it is often private and the child is cautioned or threatened to not disclose its occurrence. Unfortunately, when such abuse is observed or a child does disclose, adequate and helpful response is lacking, resulting in another betrayal and another type of trauma that has been labeled secondary traumatization or institutional trauma. It is for these additional reasons that complex traumatization is often compounded and cumulative and becomes a foundation on which other traumatic experiences tragically occur over the course of the individual’s lifespan..especially if the original abuse continues to go unacknowledged and the aftereffects unrecognized and untreated.”
The bolded parts above somewhat reflect my own sense in attempting to make sense of what we’ve experienced…especially when sharing heartaches with others close to us & getting less than supportive responses. Obviously what we have faced is/was rather overwhelming & many people do not have a frame of reference from which they might relate to us or our experiences…
“Cumulative adversities…can worsen the impact of early life complex trauma and cause the development of complex traumatic stress reactions.”
“Such complex stressors are often extreme due to their nature and timing…most threaten the individual’s emotional mental health and physical well-being due to the degree of personal invalidation, disregard, deprivation, active antipathy, and coercion involved. Many of these experiences are chronic rather than one-time or time-limited and they can progress in severity over time…as their original effects become cumulative and compounded and the victims increasingly debilitated, despondent, or in a state of adaptation, accommodation, and dissociation. Because such adversities occur in the context of relationships and are perpetrated by other human beings, they involve interpersonal betrayal and create difficulties with personal identity and relationships with others.”
The above truncated paragraph expounds on the concept of trauma magnifying its effects over time…
“It is now understood that ongoing abuse or adversity over any developmental epoch but especially over the course of childhood can have major impact on the individual’s development in a variety of ways and involve all life domains. In fact, recent studies have documented that abuse and other trauma result in changes in the child’s neurophysiological development that, in turn, result in changes in learning patterns, behavior, beliefs and cognitions, identity development, self-worth, and relations with others…”
The author is arguing why PTSD is not an accurate diagnostic label but CPTSD is being developed & studied for inclusion in future diagnostic manuals…see immediately below
“Complex PTSD was suggested as a means of organizing and understanding the often perplexing array of aftereffects that had been identified into one comprehensive and overarching diagnosis. Moreover, the diagnosis was a way to de-stigmatize aftereffects and symptoms by acknowledging their origin as outside the individual and not due to the character (or character defect) of the individual.”
“Due to the complex traumatic antecedents (in the distant past as well as in the present) and the resultant array of traumatic stress symptoms and other impairments, complex traumatic stress disorders tend to be difficult to diagnose accurately and treat effectively. It would be useful to have a diagnostic conceptualization that is encompassing to understand and organize the various aftereffects.”
These are the aftereffects of complex trauma listed by the author:
- Alterations in the regulation of affective impulses
- Alterations in attention and consciousness
- Alterations in self perception
- Alterations in perception of the perpetrator
- Alterations in relationship to others
- Somatization and/or medical problems
- Alterations in systems of meaning
In discussing treatment the author shares this insight that seemed relevant to me…
“Exposing these patients clients too directly to their trauma history in the absence of their ability to maintain safety in their lives or to self-regulate strong emotions can lead to retraumatization, and associated decompensation, and inability to function.”
Recommended treatment includes “sequencing of healing tasks across several main stages of treatment. These stages include (1) pre-treatment assessment, (2) early stage of safety, education, stabilization, skill-building, and development of the treatment alliance, (3) middle stage of trauma processing and resolution, and (4) late stage of self and relational development and life choice. There is overlapping therapeutic work throughout the stages and often a need to rework stabilization skills over the course of treatment. But as each stage builds on the previous work, the trauma survivor acquires growing control and mastery, which directly counteract the powerlessness of victimization and its continuing aftereffects.”
Pre-treatment assessment includes “emphasis on current stressors and available resources for use in the development of a treatment plan. This is also the time to take a broad look at needs and resources, including available health care resources, which can so easily be limited by a client’s disability or by managed care insurance coverage or by his/her own motivation or emotional capacity for treatment.”
In addition to financial challenges, & “feeling” that there are few, if any, safe & therapeutic places &/or people with whom to decompress I relate to the bolded info above.
Early stage treatment suggestions: “Skills to be developed include healthy boundaries, safety planning, assertiveness, self-nurturing and self-soothing, emotional modulation, and strategies to contain trauma symptoms such as spontaneous flashbacks and dissociative episodes. Additionally, attention to wellness, stress management and any medical/ somatic concerns is needed. Medications such as antidepressants and anti-anxiety drugs are often helpful and should be considered to target posttraumatic symptoms and those associated with depression, anxiety, and sleep disorders.”
Much of what is mentioned above seems relevant to me…
“The middle stage of treatment begins only after stabilization skills have been developed and are utilized as needed. This stage involves revisiting and reworking the trauma with careful processing to integrate traumatic material along with its associated but often avoided emotion. This stage typically involves the expression of pain and profound grief but with the support and witnessing of the therapist. The re-working of trauma is always destabilizing, so the skills learned in the early stage of treatment provide the frame and skill-set needed to face and integrate the previously avoided traumatic material.”
I guess since I personally have not gained the early stage “skills” the suggestions for the middle stage seem truly daunting & off-putting.
“The late stage of treatment involves identity and self-esteem development and concurrent development of improved relational skills and relationships. The important issues of intimacy, sexuality, and current life choices, including whether to continue certain relationships and vocational choices typically occurs in this stage, if they have not been addressed earlier. Additionally, clients at this stage often encounter an existential crisis associated with a new sense of self and must struggle with the meaning of the now integrated trauma memories and with the losses they have endured. Survivors at this stage often struggle to embrace life with renewed energy and hope for the future. For some, meaning-making may involve a commitment to make a difference in the world, particularly with respect to decreasing violence. This is sometimes referred to as a “survivor mission.””
In conclusion “…new and different approaches to the treatment of complex trauma are now available and effective. Survivors who were once confused by their symptoms and who despaired of ever receiving understanding and assistance now have the opportunity to receive effective treatment, to heal, and to get their lives back and on track.”
So, I don’t know if this limited understanding of Complex Post Traumatic Stress Disorder (CPTSD) is necessary to potentially pursuing “trauma informed therapy” nor whether I’m even actually open to such a pursuit. It is, however, interesting (at least to me) and adds to my overall understanding of the group of people who experience trauma in ways that are complex or chronic or otherwise different from the traditional PTSD population.
There are numerous bibliographic references provided at the end of Dr. Courtois’ article that may be worth investigating by any interested parties.
Well, I hope this post will be of interest or assistance to someone other than just myself. Please feel free to drop me a line if any of this is meaningful to you.
God bless you in your own journey. May we all ultimately look to the true Healer & Lover of our Souls to provide all that we need “according to his riches in glory in Christ Jesus.”–Valerie
Although this post I did elsewhere addresses issues preceding the traumas associated with special needs parenting it still might be a blessing to you: